Mom, Empty Nester, RRP, Christ Follower, Friend, Food Lover

rare disease

There’s so much to update on, that I honestly don’t know how to compose everything into anything that would resemble a coherent post. So, I sit here wondering do I just move the fingers into a session of word vomit, or do I simply type what is recent and let your imagination fill in the rest-if that imagination makes me a new Disney princess…I’m your new BFF.

Yes, I still have RRP. Yes, I still have a trach. Yes, I still am making the short and quick Atlanta trek down to Emory for infusions. (Stop laughing, pick yourself up off of the floor…cause we all know short and quick in Atlanta is an Elf worthy “Sitting on a throne of lies.” Yes, I still dream of that elusive loud and audible voice. So, here I go….

Somewhere along the way recently, I lost count on my infusions. I think I’m at thirteen, but maybe it’s fourteen. It’s one of those, and at my age, I’ll just roll with both of them. One is right, so I’m at fifty-fifty for being correct. Pretty good odds at pre-menopausal age. My most recent infusion was a week ago. Infusion clinic staff have a gift…and it is the gift of somehow remembering every name that comes into the clinic. It makes a cruddy day much easier to deal with…you feel like you are with people who truly care about you and your outcome. I’ve been having a fairly decent level of pain for several weeks now. Cardiac, nope. Viral or bacterial related, nope. A new CT/PET did not show anything that would cause pain. The most logical explanation at this point is that it is a rare side-effect of the Avastin. After speaking to my oncologist and to another health provider at Hopkins, I now know two other cases who had similar pain. My oncologist has decided to go to a six week infusion interval in an attempt to see if that helps the pain. My pulmonary has also added in a gastro appointment just to rule out silent GERD/reflux. She doesn’t think that it is gastro related pain, but it is a fairly inexpensive process to rule out, so add that to my holiday joy! On a side note, I’ve learned not to fear the thin envelopes that come from BCBS to indicate my “Claim is under review.” It’s only money, right? An unpaid claim would just be a tiny expense of 16K…..do they take the credit card that comes with business Barbie???

All in all, things have been stable since March. Laryngeal disease is non-existent right now. Tracheal has had some shrinkage, but nothing new. (My tracheal disease load was increasing rapidly pre-infusion days, so this is very good news.) Pulmonary, we may be seeing the first signs of shrinkage…we won’t know for sure until the next scan in late winter/early spring. We have stable lungs with no new disease, and we are celebrating that. For pulmonary RRP, that is sometimes the best outcome. I do spend far too much time wondering if I am converting and we are missing it….I struggle to trust the scans. I’ve had to post far too many “Our Warrior community has lost another Warrior…” on social media. The disease can become such a daily part of your life, it’s easy to forget that is a disease that acts as a thief…and sometimes that theft is a life. Each death being so personal to everyone in our community-a community that is an extension of your family.

With my future unknown, I know it’s a day to day process. Yet, I also know that as a human, I look at the mountain that seems so impossible on the bad days. Then, something new in research will be published, and hope breathes another day. Most recently, we are seeing simply incredible news out of Australia. Australia Sees Dramatic Drop In New RRP Cases This brings tears, joy, hope to our community. While the cure is still elusive, we know we have a drug in our arsenal that can help to end new cases of RRP….and we cannot preach it loud enough….Gardasil works. Gardasil saves lives. Gardasil can end new RRP cases. Do not be fooled by fake science. It’s safe and effective. Don’t be fooled by the Christian Purity message that virginity will prevent HPV infection…it won’t. 80% of adults by the age of 50 have had HPV exposure. 8 out of 10. (I am saying this as a Christian-get your children vaccinated with Gardasil. Virginity is not protection. Don’t have that guilt one day if your child is diagnosed with a HPV related cancer. Don’t have that guilt one day if your grandchild is diagnosed with RRP.) In October 2018, in the US, the FDA approved a new age range for Gardasil vaccinations. Now, if you are 9-45 (male or female), the vaccination is now approved for you to request. Thanks to ACA, it is a required payment vaccination. Insurance based on ACA must provide this vaccination, just as they do others such as Polio and MMR. 80% of cervical cancers are caused by HPV…..80%. Many men/women will never know they have been infected with HPV. No symptoms does not mean no infection. Know the facts. Ask me. Go to the CDC website: CDC HPV

I’m sorry, I digressed….but we are just so eager to reach the goal-line of no new RRP cases. No child, no adult should ever have to endure hundreds of OR interventions….ever. Not for a virus we now know we can prevent. If you could vaccinate your child against cancer, would you? Of course you would, so don’t delay on Gardasil vaccinations. It’s literally a cancer vaccine. Do it for me….do it for my RRP community.

Back to the update. I’m excited to say we now have TWO active pharmaceutical trials in the US. One at Mass General the other is a new one at the NIH. Community, these trials need you. For us to find that elusive cure, we must be willing to be trial participants. Contact me if would like more information on the trials or what being in a NIH trial is like.

So, yes, I am somewhat in the same holding pattern, but holding pattern with NO OR IN TWELVE MONTHS….I’ll take that deal.

In October, I was so fortunate to be able to be part of RRP Atlanta 2018. Being able to spend a weekend with my fellow Warrior was medicine to my soul. Then, being able to take part in the AAO-HNSF as a RRPF representative….gosh…I love this. I shared recently that I think my heart grows a millions times over when I’m in the trenches for RRP. It’s such an honor to be entrusted with any part of the process towards awareness/better treatments/cure/education. One of the advocacy highlights of my year was being selected as a scholarship recipient for the NORD Summit in October. It has already proven to be an invaluable conference for the RRPFcommunity.

For #GivingTuesday, the RRPF shared some of our Warrior stories. If you haven’t already, travel over to Facebook to RRPF ORG and scroll down for the stories.

Merry Christmas, Happy Holidays, Happy Festivus…whatever it is that you celebrate during this season….and if you need an end of the year donation cause…find us on Facebook at @rrpforg Help us find the cure….help us educate our community and the world around us.

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Sorry for the MIA status. I have no excuse, other than summer is the “Peer Pressure” King of all seasons. Am I the only one who feels guilt if not sitting by the pool on a warm, sunny day? Anyways.

Tomorrow, I head in for infusion #10. Monday, I have the CT scan to measure where we are with pulmonary and tracheal disease. On October 3rd, I will visit the oncologist to learn what our next step is based upon those CT results. The hope is that things have continued to resolve and that would allow us to try infusions at six week intervals, instead of three week intervals. I spoke to a fellow warrior a few weeks back, at another clinic, and she was at twelve week intervals. How awesome would that be? No visits to the OR, and besides flushing the port every four weeks, infusion visits spacing out to twelve weeks….awesomesauce. While the days of post-infusion nausea appear to be over, the Avastin headache is real and I’m hopeful that if we can space things out more, I can stop that nightly dose of Tramadol. (Although, that dose of Tramadol at night does have the pleasant “unexpected” plus of reducing my night-time coughing.)

My last OR trip was December 2017. I’ve been scoped in office twice since then, with no disease present above or on “my larynx.” (I use air quotes as a reminder that my larynx looks more like an alien from a far away planet than an actual larynx.)

I get asked frequently how I am feeling. Most days, good. Some days, incredibly tired. I’ve always said that if I take a nap during the day, it must be the return of the plague. So many causes of fatigue, especially if a female in her early 50’s…..so it could just be the Armageddon raging between hormones a and b and c and d and e and f and so on….younger gals…get ready….it knocks you on your backside. That’s all the encouragement I have to offer.

Something I’ve noticed since I began going to the infusion clinic (head/neck oncology cases are infused on Wednesday and Friday), is that I’ve seen many come and go. I find myself desperately wanting to ask where they are now….did they complete their treatment cycle, did they end treatment, did they die? I especially want to ask about the grumpy former Marine guy. Some days, I cringed at some of the things he would say, but I find myself looking for him at each check-in. I see the same nurses each visit, the same front desk workers…..we’ve reached the point where we don’t even talk about medical things…it’s about summer trips, favorite foods, etc. I’m normally on campus about five hours total. A good bit of that is sit and wait. Some are there twice that amount of time. Some even go home on treatment.

I’ve tried to learn things while on this journey. Or at the very least, see things from a new perspective. I keep coming back to the fact disease, illness doesn’t care about your socio-economic status, what title you hold at work, your good deeds, your mistakes….every single person that I have met in the journey could be anyone of us. Just as I cannot make sense as to why I have this disease, I cannot make sense as to why those I have met have their disease. I hear the phrase, “I have been blessed with good health,” a lot. I’m not sure we can really say that. That implies that God favors one of us over the other, and that’s not His character. That phrase implies that I, at the age of five, did something that had God remove a blessing of good health from my life. It reminds me of the prosperity gospel, but used in health conversations. I digress.

So, back to infusions and paps. I haven’t had a papilloma dislodge in months now. I can still smell more than I have been able to smell in years. (This is a mixed praise….the mixed smells of a food court make me want to turn green and run to the nearest trash can.) I have never regained that amazing voice that I had for that period during the NIH trial. Just as we have no idea what brought it back, we have no answer as to why it hasn’t returned. Side effects, gosh I can sometimes be so tired. The Zofran and I have cooled our relationship, and that’s a good thing. The blood pressure settled into its new norm. Still high, but not let’s get this girl on medication serious. We all know the cause of the rise, and that allows some “leeway” in whether to treat it or not. As I said above, the Avastin headache is for real. It’s always in one spot. Thankfully, the nightly dose of Tramadol has brought the headache count way down. The port is still the best decision I have made this entire journey. The placement was awful, and I’m not sure I could do that again without being under general anesthesia. For any of you that receive regular infusions, I strongly encourage a port. For now, the insurance approvals for the drug are rolling in without an hiccups. I know how fortunate I am to have insurance that approves an off-label treatment. I do not take that lightly.

Now, I assume you are still wondering why I typed “Fuzzy Faces” in the title? Well, here’s the little “oops” we have been dealing with the past few weeks. Seems highly likely that I experienced TIA’s. One in Austin, one upon return from Austin. We are still in the “testing” phase, and I have two more weeks of the thirty day heart monitor, but so far nothing is jumping out. Neuro is leaning heart, so we shall see soon. You want to see an ER move…walk in and say your face feels numb on one side and that earlier in the week you lost your words and couldn’t recall words…and that your right hand went numb. Seriously, if you ever experience anything that could be a stroke, run to your closest “Stroke Certified” center. I was impressed and I don’t impress easily when it comes to medical anything. PS-Also, don’t be me and ignore the Austin symptoms. So, I’m a semi-robot walking around with this patch and hi-tech bluetooth talking thingy. I have trouble keeping up with my actual phone, so adding another “phone” into my daily life has been fun. Yes, it does give you little annoying messages if you go out of range from it. It also beeps very loudly at 1AM when the patch monitor dies and needs recharged.

Well, there ya go. The update. Exciting things in October though…some of us RRP folks are gathering in Atlanta, then there’s the AAO conference, then Kimmie will be traveling to DC to rep the RRP warriors at the 2018 NORD summit, followed by a trek west to celebrate the best Birdie in the entire universe. So, here’s to better treatments, a cure, discoveries to restore voices, and dismissal of resentment of being sick. (Yes, I’m human…some days I resent this disease like I resent frogs.)

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“Isn’t it a bit unnerving that doctors call what they do practice?” —George Carlin

We are almost two weeks post infusion #3. We are almost one week from the first scan since beginning Avastin. In other words, this cycle is a big deal.

My J was in town for his break for #3, and I sure did love his face sitting beside me during the infusion. He is the perfect infusion partner-quiet, mindful, and unshakable. My favorite introverted extrovert.

The day began with labs, and given the drama of the last infusion, we decided to wait on IV and break out the butterfly. Seems I am now tagged to lay back for labs….this is what a drama ridden blood pressure will do to you-tagged, noted, flagged. All went well and off to clinic.

Clinic. “Wait, that’s high for me. Can you recheck that?” Near mirror readings. It seems I may have developed one of the most common side effects of Avastin, high or elevated blood pressure. Was told to monitor it over the next few days and report back via email on Monday. (Further down is an update.) Released for infusion.

After some celebration by infusion nurses that came to my chair over my scheduled port (Yes, I’ve decided to get a port.), a tag team effort begin to get an IV in that would hold and flush. Two attempts. The second landed in the top of my right hand, and it did flush, it did have blood return….but man….was that little baby sore! After playing with tubing, taping, anchoring and getting my hand and arm positioned on a pillow to relieve some of the discomfort, drugs were up and the “IV hold” dance commenced. I had the same nurse as infusion #2, so it was nice to see her being so helpful as we worked to complete the infusion and baby the IV. She told Josh how sweet I was, and I made sure he heard that! Due to the IV being in the top of a very tender hand, we did have to slow the rate down just a tad more due to burning. We chatted about the process once a port is in, and let me just shout this-I CAN’T WAIT! My veins are all doing a happy dance, and I know not only will the process be easier on me, but less stressful on the entire infusion day team. Years of anesthesia running through my veins, veins that are just tired….mixed with running a drug that prevents the formation of new capillaries, and I think we are all in agreement….praise hands to the port! I’ve received so much support on this decision from those in my RRP community who have already walked this road, the spouse, the parent, the son, the daughter, the nurses, the oncology team, friends who have walked the road of regular infusions….I know it’s the right decision!

Infusion ran. Done. IV out…time for lunch. We went back to Ponce City Market and had the wonderful shrimp po-boys again! Yummy, sweet gulf shrimp!

The rest of the day I spent just being lazy. We had been so busy while Josh was in for break, we all were happy to just “be” and take in Stranger Things.

Infusion #3 notes:

Nausea night of and some the next day.

Back pain-this one was new. It lasted two days, and was more evident at night when in bed. It was not fun.

Elevated blood pressure has not left, but it is staying somewhat consistent.

Cough seemed increased first three days and has grown less to be back where it was prior to infusion #3.

So, all in all, I cannot complain about this process. IV access has been the drama for me, and I haven’t really worried about the blood pressure as that’s an easy fix and will be temporary.

Now, to set the anxiety on the table and walk away from it as I head towards the scan next week. The scan determines if we proceed to the next cycle of three. No progress, we cancel port procedure and any further infusions. We are all so certain we have seen changes, that I know it will be a huge crushing blow if there has been no regression of disease. I’ve read all the “read this verse”….I’ve listened to all the “listen to this song”….and I have readily admitted how mad I get at God sometimes over this disease and all it has brought. I’ve also tried to focus on what this disease has brought to me that I cherish-and that’s my RRP community and some of the medical staff along the way. I really do have this extended family, most of whom I have never met, that gets me…gets all of it. I wish I could undo the stress this disease has brought to Lee, Josh and Meg….and to my parents. I guess that’s what I hate the most-what it has done to those around me. As we sat in church this past weekend, and Passion band was blowing the roof off the building…I kept this thought in my head-oh, how I wish I could sing…a voice that would be used in a mighty way. That’s my bucket list #1 item. My heart sings so loudly….and I dream of my voice matching my heart.

So, we march towards next Wednesday…..with fingers, toes, ears crossed.